Gracie's off to Seattle's Children's Hospital

Monday October 11th-

Meghan and I put together these really fun "Thanks NICU nurses" wagons with appreciative sayings. I was planning on doing a weeks worth until she was released but plans changed. That seems to be the way things go. They were fun even though it only lasted for two days.

NICU nurses are worth a mint

NICU nurses deserve kisses
(Germs are not a desired thing in the NICU
so this is the way Grace gives kisses...germ
free) 

Today started with energy to get her test done so we could see what was happening inside of little Gracie's intestines. After rounds with Dr. Z, we came to the quick conclusion that the best thing for little Grace would be Children's Hospital in Seattle. She was willing to do the GI contrast study but if Grace needed to have surgery she would be sent there anyway, then they would do the tests again. So for the sake of Grace having to do the tests twice...away we go. From the time Dr. Z  and I made that decision, I had 1 hour to get home, pack and get back...which was tough as 30 minutes were tied up with just the travel time. John came home from work, quickly took the boys to Seminary and made it back in time to return me to Kadlec Hospital. I walked into the hospital and within 5 minutes the transport team was there. They had flown immediately out from Seattle's Children's Hospital in a Lear Jet. They put Grace into a travel isolette and we were off. The travel time in the jet was told to me to be 1/2 an hour. So within one and a half hours we were in Seattle. I didn't even have time to call but just a few family members and a few friends who needed to know to be able to help out with my family left behind. I was able to ride in the ambulance and ride on the jet with little Grace. Thankfully! 

Air Medic checking Grace for a safe trip. Nurse Nancy, on the
left, loves Grace so much. She was thrilled to get Grace this day.

Tech medic making sure all the machines are tweeked for Grace.
Isolette is on the top of the machines and stretcher.

Little Grace inside the very small travel isolette.

Puffy, puffy little Gracie. TPN through IV is NOT a friend to Grace.
She gained over 19 ounces of fluid over the past week. One promise
I have to you, Grace, I will go wherever I have to to find
out what is wrong.

Nurse Nancy must have picked up my camera
and captured me trying to line up housing
in Seattle for myself in the few minutes I had
before leaving. Thanks Nancy...you're the best!

Into yet another ambulance.

The suitcase and two bags is all I could take. I had to even leave
Grace's clothing and blankets at the hospital. I guess the plane
is very small.

I captured a picture of the plane I was flown on one month
ago before she was born.

This is the Lear Jet set aside for Gracie. Girl, you are travelling
in style!

Did I forget to mention that Tom Cruise was the pilot? I got
to meet everyone on this plane. Pretty cool when they come
up to you and introduce themselves and shake your hand.

Here comes Grace into the plane. They board from the back to
the front, so I was first.

Into the plane she goes.

One of the two pilots checking on their little patient, Grace.
He smiled and reassured her she would be safe and ohhh
how cute she was. Nice guy.

Hmmm....water to drink, earplugs to drown out noise, a fire extinguisher and an emergency exit all within easy reach. Should I worry? Should there be a reason for all these things within reach...not very comforting. *laugh*

To my left where my arm rested

To my right, do you see that??
EMERGENCY EXIT...Scary! How would I
make it out with those bags there anyway?
LOL

Ok, this guy was cool. He was so friendly.

Maybe I should have worried when the guy in front of me asked if I've ever been in a plane doing a "short runway takeoff". I hadn't so he told me they rev the engines while the brakes are on then quickly take off the brakes. Consequently, you speed down the runway at rocket speed. It was so cool. I was stuck to my seat with my cheeks back where my ears were...well, you got the picture. I also had the best seat in the whole plane. I sat in the middle where no one else did so I had the view up the walkway, through the cockpit and out the front window. It was awesome.

The cockpit

TAKE OFF!

Richland airport without a control tower

The dark hill on the right in the middle
is the hill on which we live...eventually
Grace will call that home. I sure miss my
family.

Somewhere down there is our home.

There was a curvy river...wish I new what
one. 

The clouds were beautiful, so puffy and white as if saying we were surrounded by angels. It was heavenly. As I looked out the window snowy Mt. Saint Helens was right out the window. Very incredible. 

 Here we are again in Seattle. This time for my daughter, not me. I love seeing things from the air. It gives such different look to what I see when I'm on land. What a wonderful world. Can you see the curvature of the Earth?

The different depths of the water was very clear from the air

Space Needle

Downtown Seattle where Swedish Hospital  is located.
Home to Gracie and I for one month.

Stadium

Floating Bridge

Warehouse district

And the best part of flying is landing safely! You agree?

This picture was taken with Joseph in mind. These planes
were all lined up so perfectly.

Smiles cover everyone's faces when a successful landing
occurs. Check out those cool red earplugs I got. 

Out goes Grace

Check out the great pink breast cancer ambulance!

Grace is ready for yet another travel to Children's Hospital.

This picture was taken for Brandon. Look at those cool
little planes. They looked just like your little RC plane.
They were basically a bubble with a tail. Cute.

We're off to Seattle's Children's Hospital. Pray for little Gracie as she goes through all the tests to come. She has come so far in her short life. She's a spunky little girl who loves life. She'll do great!

Our first view of Children's inside.

Grace's new warming bed.

You know you are in Seattle when you
get a cup made from corn. Does that
mean you can eat it? COOL! Tasted
like plastic. Bummer. I thought I could
drink my water and eat corn too. :)

This is a two-story stained glass Alaskan whale hanging at
Children's hospital. Very nice.

The whale

This is on the way down a hallway towards the cafeteria. This
picture was taken for Meghan who loves, loves, loves horses.
Pretty awesome! 

This is the same hallway with different scenes

Poor Gracie needed to have lots of blood lab work done so tomorrow they can have a baseline for her. After all the tests and admission prodding, Grace gets to rest for at least 3 hours. So goes the hospital life.

Sleep Grace, sleep. Tomorrow is going to be a big day meeting
doctors, specialists and having tests done. You are my hero.

October 8th-10th Kadlec, Mom, Meghan and brothers

 It has been quite a whirlwind of ups and downs which I pray will soon end.

Gracie is getting better at Kadlec Hospital
Friday October 8th-

Gracie was put back into an isolette to keep her heat. This is good because she was moved off of the warming table...aka...surgery or procedure table. I've grown to not like these tables. If I left and came back with her on one, I knew there was something wrong. I was so glad to see her progress to an isolette again. No feeds as of yet. Still waiting for her 10 days of no feeds to end. She is appearing to be getting better.


Saturday October 9th-
Thank you Lisa P. for an adorable, hand knit flower hat. Such incredible talent. Your hats are so very soft and I love the cotton! I love the flower added to the front. 

Her head has been covered with such love from many hats by many friends! 

We were saying that with her IV on the top of her head and not wanting to squish it, she looked like Queen Elisabeth. It was so nice to laugh about something. :)  It's these fun little packages of love and thought and prayers that line each day with sunshine and hope. She is going to grow and fill this hat someday.

I love how all the nurses love and cuddle Grace...and even occasionally jokingly argue over who gets to care for "little Grace". This nurse won that day. **Smile**


Sunday October 10th-
The greatest change happened health wise and Grace is doing well enough to try something new, even if she was once in an open crib before, it was so great to advance. Grace graduated to the open crib again. YAY! 

Next came her first colorful mobile. She loved it! 

All tuckered out after play time

Sister Meghan visited all day. Super girls time. Meghan and I had such fun.

 During "nap time" Meghan found that rolling office chairs were suitable to sleep in. LOL. Funny kid. She kept me laughing. 

Gracie's head IV infiltrated while I was gone for half an hour so another IV was placed very close to the old site.

This cute little angel, thanks Hannah U., has been looking over Gracie since she got sick this time. It is the Angel of Miracles. Fitting huh? I love the baby bird she is holding. Grace has been as fragile as this little baby bird. Angels are all around my little baby bird, Gracie.

Great picture taking, Meghan!

Another great nurse! Tiffany helped us so much!

When I went home that evening, big brothers Tyler, Brandon and Samuel were goofing around. Sumo wrestler Tyler ended up carrying Samuel strapped in. I wonder if Sumo wrestlers ever used their straps for this purpose. Maybe Tyler should paten this idea! It was hilarious.

Tomorrow is the big day for Gracie's GI contrast study.

Day 54 4.4 pounds NEC or is it??

Yes, the title is correct. The Head Radiologist met with Dr. Hadeed and came to the conclusion that they don't think this is NEC after all. They think there is a blockage in her intestines like scar tissue from the medical NEC she had a few weeks ago. They are going to run colored dye down through her intestines and up...I'll leave that part out...to see where and how large the blockage is. Depending on those findings, where and how large, it will result in either a safe place and size needing surgery when she gets older or leaving it alone, or if it is in an unsafe area and size she will need to be flown to Seattle for surgery to remove the area of intestine. We will know by next week what avenue she will be taking.
I was thinking she was coming out of the woods a little bit because she was more alert during her short wake times. Her abdomen is still very large but the xrays are showing that there is just a ton of air. This has happened as a result of the Repogle tube being taken out. It isn't taking the air out for her. She has to pass it on her own. The fluid retention from the TPN and Lipids having been started this week. She is very Ademic when it comes to keeping her fluids. She has gained 11 ounces in the last 4 days as a result from fluids. Her face, neck, hands, feet, legs and bottom are very puffy and large. She looked very different to me today. I'm sure they will administer more Lasix soon to have her pee off the fluid.
Grace finally received a PICC line in her arm, not her leg as thought yesterday. The doctor did this one because she is so hard to get. Third time was a charm.
She graduated from needing the oxygen and air pressure support from the nasal cannula. Her abdomen, though large, isn't pushing up on her lungs to the point she needs help breathing anymore. This is so good! What a breath of fresh air for Gracie!

Grace is still fighting with all her might...NEC is bad!

My sick baby, Grace. Scalp & arm IV in place. Repogle tube
sucking fluids out of tummy. Nasal cannula delivering
pressure and oxygen. Very large abdomen.

All she can do is sleep. No wake times yet as of Tuesday.

Please continue to pray for Gracie, as I know all of you have been.
Quick update: Still fighting with the NEC (Necrotizing Enterocolitus). The x-rays are getting a little better each day but this time it took a toll on her. No food has been going through her GI track for over 5 days now and she is letting everyone know she is hungry! Then she tires out and crashes back to sleep. She still has another 5 days, minimum, before they will start her again. No fortifier this time. She has clearly shown us that additives don't work with her system. It is just too immature and sensitive for anything other than breastmilk. Hmmm, think that is why it is best for baby?

Sleep Gracie, sleep. Antibiotics work, work, work.

 She currently is on two new antibiotics to hopefully zap this infection. Grace has lost 5 IV sites in the last couple of days now they need more. They tried to get 3 IV sites and 2 PIC lines in last night but her veins are just not holding up. They finally got one IV in her scalp this morning but it isn't flushing to easily. They will be trying to put a PIC line in her groin or inner thigh area today. She really needs two lines entering her body for all the fluids and medicines. Many of them are not compatible. She has been, weight wise, between 3.9-3.11 for over a week now. Seeing that most of her weight has been gained by IV fluids and blood transfusions in the past, I'm anticipating a weight gain this week. It won't be lean weight, which is what we aim for her to gain and she will be on more Lasix to take away her puffiness. Because of this, it is very hard to find any veins along with them rolling and collapsing. This reminds me of...me. I have very hard veins to find and then they roll and collapse or have the valves not working the way the nurses think they should. Bummer. I feel for Grace.

cloth diaper covering her face from exam
lights. Grace receiving oxygen. Poor feet poked
from blood tests and IV attemts.

After a night of very labored breathing, the
oxygen is her friend. Nurse is holding the container
which the Repogle empties into.

This is my friend...oxygen. Don't take it anywhere.

 She still has the Repogle tube down into her tummy to remove any air or secretions. When this was first put down into her stomach, they pulled out 14 cc's or ml's of slimy, half digested, clearly not a good mixture of old food. After a few more suction times, bright, neon green fluid came out. 5 cc's worth! This impressed the doctor and nurses so much that it was on display for about 8 hours. Not a good color, that is unless you are part alien, not from another country, but from clearly another world!

Two nurses getting her IV situated just right.

Oxygen was put back on today. They took it off last night but she just kept desating. She isn't needing to be stimulated to breathe anymore, most of the time, because the inflammation in her intestines is going down. It isn't pushing up into her lung cavity anymore. There is still traces of blood in her stools so she is still fighting this. She got a blood transfusion, again, two days ago. Please donate blood! Donate in Grace's name. She can't use it but someone else can! This saves anemic babies lives! She has used two different donor's blood as of now. After the 10th of October, if she needs more blood, it will be her third donor.

Her blood transfusion...her lifeline. Anemia set in yet again.

You know you have a sick baby when...
you see this many machines helping her.

Xrays are a common thing for Gracie now. She gets 2-4 a day. I think she'll be glowing when she makes it through this!
Monday night was the hardest for me, realizing that she was severely sick and waiting for antibiotics to kick in. I felt, for the first time, Grace's life was in danger more than ever. I really felt like she might not make it through this one. The doctor was pleased to people from our church come and give a blessing to her. She said, "Pray! Pray hard! Ask everyone to pray!" Coming from the doctor, that was comforting but also scary. Poor Gracie did everything she could to keep breathing but with all her intestines being so inflamed it pushed into her lung cavity so hard that it took everything Grace had to breathe. Thankfully Missy S. came and sat with me next to her all night. It was long, exhausting to see her work so hard and very stressful to keep touching and sometimes shaking her body vigorously to remind her to take a breath. Hugs from the doctor and nurses helped tremendously. The doctor stayed very late, like 2 a.m. watching her too and was back again at 8 a.m. for her xray results. We were all very concerned for her. She even said if I wanted her to be transported via Flight For Life to Seattle, she would. I asked her if she felt confident she could help Grace, she stated "yes" and if there was any doubt, she would fly her there. I feel Grace is in the best place, for now. If she perforates her intestines then she will be in Seattle very quickly.

Exam time

First time she would even move...it was for a pacifier.

Thank you to Tyson Manning and Brother Amparan for rushing to Grace's side and giving her a blessing for the sick late Monday night. She needed it fast and you were there for her. Thank you! You will be blessed for your service! Also, after a long night on Tuesday, I was blessed with having a great dinner delivered to our house and there was leftovers for me! How nice that was to have a warm, yummy lasagna meal waiting for me. Goodbye, cereal or sandwiches! :) Love you sisters! You are making such a difference in our lives!
I apologize to both viewers and Gracie for not keeping up with the blog for the past week. I will catch up but for now, I need to be with Grace in person. I know everyone agrees. I get to hold her for the first time, skin to skin, this week. She has been too sick to hold.

Time for her sizing pictures...she is getting
bigger!

The best part of Grace's day was being held by big sister, Emily.

Please pray for Gracie...again

I will go into more details later but Gracie has NEC again. She is very sick. Please pray for her recovery. The doc's are treating Gracie for NEC again. I was up all night with her stimulating her to keep breathing.She was put back on two forms of antibiotics, She is having lots of Desats and Apnea. She has a dusky tone to her skin, blood in her stools, air in her intestines, lethargic, etc. Please pray!
Thank you!